Tuesday, October 25, 2011

Beach Memories…

Lots of memories were made during our beach vacation… it’s hard to believe that it was just a little over a week ago that we were basking in the sun, with the wind at our backs, and sand in between our toes. We thought long and hard about how a vacation like this would work for our family. As you can imagine bringing four children anywhere is challenging, but having one very “special” child, one who can not get wet because she has four IV lines hanging off of her body at any given time, a urinary catheter taped to her leg for most of her day, two drainage bags attached to her g and j tubes, for the next month a cardiac event monitor strapped to her chest, temperature regulation issues, and at times has sensory issues beyond comprehension….well, you can only imagine the challenges that we faced. Lucy’s first time at the actual beach lasted, at best, ten seconds. She was drawn to it however, I think watching “her kids” run in and out of the waves and play in the sand with such enthusiasm intrigued her, despite her nervous system signaling her brain that it was too much. By the end of the week we were ALL able to enjoy the beach for forty-five minutes as a family of six! We rented a house right on the beach so that our three water babies could enjoy the sun, sand, and surf whenever they desired and for as long as they desired, all the while keeping Lucy on her strict schedule. While Lucy napped, the mama read two novels and buried her feet in the sand, the daddy built sand castles and hunted for sea shells, and the kids were thrilled with just being at the beach!

When we left, more than a few tears were shed, and conversations about doing this again next year were had…all signs of a great vacation!

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FOR THE LOVE OF LUCY RESEARCH FUND

In loving memory of Lucy Grace Marlett, the bravest five-year-old girl we know. Please help us to find a cure for Mitochondrial Disease by clicking on the image and donating to the "For the Love of Lucy Research Fund" established by her family and the UMDF. Thank you for your love and support!

ENERGY FOR LIFE WALKATHON

UNITED MITOCHONDRIAL DISEASE FOUNDATION

We are All the Marletts, a family of six trying to live life to its fullest! My husband and I fell in love at a young age and dreamed of being married, having a family, and growing old together… Even though our life is what we hoped it would be, we could never have imagined what GOD had in store for us along the way. Being parents to four remarkable kiddos has proven to be MORE in every way! When our youngest was born, although we didn’t know it right away, we were given the privilege and challenge of raising a “special child”, a medically complex child. Since starting this blog, Lucy has been diagnosed with Mitochondrial Disease, a progressive degenerative disease of energy metabolism. Even though this is a blog about our life as a family, I write often about Lucy’s medical issues. If you care to read about the trials and tribulations of raising four children, the joys and hardships of our family life, the emotional roller coaster ride that raising a medically complex child puts one on, and the love that pours from my heart onto the pages of this blog then…welcome!